Restarting the Conversation on HIV/AIDS in the United States

Myles Helfand: In the situations where you're meeting people and seeing people, the people that you've just described, how do you balance that with the desire to put together a film that tries to be objective and just tells the story the way it is? How do you avoid getting preachy? How do you avoid getting caught up in the desire to just fix things?

Susan Koch: Well, you know, it was interesting. Jose and I, last year we taught at Georgetown University, and we used the making of the film as part of the class. We just, a few weeks ago, screened it for the students. One of them asked a question about J'Mia, and said, "How could you -- didn't you want to just do something to get her housing right away?" I honestly think the answer is: She got housing. I mean, I can't say definitively, but I think that the fact that we were shining a light on her ultimately helped her situation, and she knows that.

But I think that you realize that you're trying to tell a story, and you need to show it like it is. You try so hard to be just that fly on the wall. It doesn't mean you don't go home and you're [not] emotionally distraught because of what you've witnessed. But it's so important for people to be able to see and hear and witness what we do. So I think that you just have to try as best you can to hope that you're treating everybody honestly, respectfully and you're bringing their stories to life. That's the first step in what we're trying to do.

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Myles Helfand: Is that one of the reasons that you referred to a couple of people that you were just talking about earlier as "characters"? Is it to try and help you keep that sense of separation?

Jose Antonio Vargas: I actually had to get used to that in my head. Susan and I actually had a couple of conversations about this because, at one point, very naively -- this is my first documentary. Susan has been doing this for a while. She's the one that plucked me out and said, "Let's go work on this together and let's collaborate." I thought we could just fit in like nine or 10 people and be like a Robert Altman film. That was my thought. And she's like, "No, we really have to find people. We need to follow their story. There needs to be an arc. We need to know where they're going." And I think, at least for me, at the end of the day, Jose represents not just Jose, but other people in that situation.

Jimmy, the 35-year-old white guy who dies. Ron Daniels, the guy with the needle exchange truck. J'Mia, the mother of three who's 28 years old. They all represent not just themselves, but other people, other women, other people who are living, out there, the kind of life that they're leading.

Susan Koch: That's exactly how I would put it, too. It's interesting you said that, Myles, because ... when you're making a film, it is a film. You want to reach a wide audience, and you don't want to just preach to the converted. I hope that at Tribeca we're going to get people who are coming because they just want to see a film and their eyes may be opened to something that they didn't know. There were so many people that we would have loved to include [in the film], and in the end we're saying, "OK, we have a story to tell and how are we going to best tell it? Who's going to be most representative of what we're trying to communicate?"

Myles Helfand: Actually, let's just back up just a moment. I think we should probably get our readers a little bit in tune to who the two of you are and what your backgrounds are. Let's start with you, Susan. This is not your first social justice-oriented documentary, right?

Susan Koch: Yes. That's what I like to do. I started out as a broadcaster in television and in news, always working on non-fiction and news programming. But I gradually evolved to working on longer, what you'd call feature documentaries. This is my fifth one that will hit the festival circuit and then go on to broadcast, DVD, screenings and maybe even theaters. It's hard to know. We're just getting started on this one.

I guess I'm just intuitive about what I choose to do. It's what interests me and what I think needs to be told and how I can tell it. And I gravitate towards people. I like people stories.

Myles Helfand: What was the last film that you did before this one?

J'Mia, a single mother of three, was infected by her boyfriend who never told her he had AIDS. Unexpectedly, she's being evicted from her apartment. Watch J'Mia's story.

Susan Koch: It was called Kicking It. It was about homeless soccer players that competed at an international street soccer tournament called "The Homeless World Cup." So it was a way of looking at homelessness, but through this competition that takes place every year in a different country. I followed characters from six countries around the world, and you were able to see the different reasons for homelessness, but also their common humanity.

Plus, it sounds crazy at first, but when you come to think about it, a lot of the best players, soccer or football players, come from the street. So it ended up on ESPN [a multimedia sports entertainment company], which I just loved, because this was a way of getting a whole new audience to be thinking about homelessness.

Myles Helfand: Jose, you're at the Huffington Post now, but you were a writer before then for the Washington Post for quite a while. Is it true that you were actually initially hired to work at the Washington Post as a tech writer and video game reporter?

Jose Antonio Vargas: Yes, I got lucky. I'd been a journalist, basically a paid journalist, since I was 17. I got started pretty early. And then all through college, I worked at the San Francisco Chronicle. Because of that, I ended up getting hired at the Washington Post right after college. When they offered me a job, they said they wanted somebody to cover the video game culture. I knew nothing about video games, so I thought it was a joke. But then again, like, "All right, let's go run with this."

But then the whole time that I started writing about video games, I started writing about AIDS. Actually, the interesting joke in the newsroom was, "How can this guy be writing about both the latest Halo game and be writing about black women and HIV at the same time?" But it was a challenge to me. And I really have to give credit to the editors at the Washington Post that let me do that.

It's so easy for reporters to be pegged. It's very easy for young writers particularly to get pegged. I remember, particularly, first getting started reporting on AIDS, one of the editors who I really liked and respected said to me, "You don't really want to be known as the AIDS reporter now, do you?" [Laughs.] I said, "Why not?" "That's not a way to get promoted in this place, Jose." I proved him wrong, because right after the AIDS series, I ended up covering the presidential campaign for two years.

Like Susan, I gravitate towards people. That's kind of just how I tell stories. The luck of the draw here is that when I met Susan, she and I are so alike in the way we look at journalism, in the way we look at the responsibility of a journalist, that we didn't even have -- I mean, I would imagine if that wasn't the case, we could have spent six months just trying to feel each other out, like, "What's the story here?" We were so on board from the very beginning that it made the process much easier.

"That's how I ended up doing the series: I was literally mapping out how the epidemic got to where it got, and discovering that the city had lost track of the epidemic. At one point, [officials] misplaced boxes of files with [HIV-positive] people's names in it that they hadn't counted yet into the final tally."

-- Jose Antonio Vargas

Myles Helfand: So you knew a good deal about HIV, particularly in Washington, D.C., before the two of you started working together on this film.

Jose Antonio Vargas: Yeah. I had written an entire year-long series on it in 2006. Susan contacted me, basically, during the height of the [U.S. presidential election] primary season, in 2008.

Myles Helfand: This is actually a question for both of you, but we could start with you, Jose. During the course of filming this, what did you learn that you hadn't known before?

Jose Antonio Vargas: For me, when I first got there -- here was the other D.C., right? And it just so happened that this other D.C. had all of these other [issues]: lack of access to health care, high incarceration rate, poverty, drug addiction, homophobia. AIDS was a way to tell that story. So when I did that, I'm like, "How did this city get to be this way?" That's how I ended up doing the series: I was literally mapping out how the epidemic got to where it got, and discovering that the city had lost track of the epidemic. At one point, [officials] misplaced boxes of files with [HIV-positive] people's names in it that they hadn't counted yet into the final tally.

The film, as you know, starts when the city finally says, "Oh, we do know how many people have HIV: 3 percent." At least 3 percent of the whole population has HIV. To put that into context, UNAIDS and the CDC say 1 percent constitutes a general epidemic. D.C. is at 3 percent.

In terms of what I didn't know, I mean, the numbers are there, right? The numbers, now people know, at least in Washington, D.C. But I think numbers hide as much as they reveal. The goal for us is to put faces and real people [to the numbers] and tell their stories that way. I think, at some point, Susan and I were both overwhelmed by just the stories of people that we found.

"I would call myself ignorant, or uninformed -- maybe that's the better word. ... even little things were very new to me, and that I hadn't thought about; and then, of course, when you learn about them, make perfect sense. Like J'Mia saying, 'Well, if I don't have housing, how am I going to refrigerate my medicine?' That's very basic."

-- Susan Koch

Susan Koch: Oh, boy, Myles. I think, what did I know? I knew nothing. I think of myself as being informed. I read the paper, and I watch the news, and I'm up on things, and I'm traveling the world. I've done a lot on AIDS in Africa. And, wow: I would call myself ignorant, or uninformed -- maybe that's the better word. I just was amazed at so many things -- even little things were very new to me, and that I hadn't thought about; and then, of course, when you learn about them, make perfect sense. Like J'Mia saying, "Well, if I don't have housing, how am I going to refrigerate my medicine?" That's very basic.

Jose Antonio Vargas: That's a good question.

Susan Koch: Yeah. But I never thought about that, and we don't think about those things. I tend to fall in love with all of my, I won't say "characters" this time, but the people featured in the film. And as Jose has talked about, with Ron: You go out there, and at first, you're in this little cramped van that the door won't even close -- because otherwise they can't get their needles -- and it's freezing and it's snowing. It's either 20 degrees and snowing, or it's 90 degrees and there's no air conditioning. And there's all these people who use drugs coming up. At first, you're like, whoa. You feel a little bit uncomfortable. Then after a while all you're thinking about is what an amazing man this is, and how much you can learn from him.

For me, I learned so much about people. I learned so much about the city that I never knew, even having grown up here.

When I would talk to people about this, even as I was filming, and they would ask me what I was working on, there were really two reactions: "Why would you want to do a film on that? That's so depressing." And the other was, "Oh, I had no idea we had a problem." So, I don't think this film is depressing.

Jose Antonio Vargas: When Susan and I first started, we were like, "OK. We don't want a gloomy film." The subject matter itself is heavy enough that I think you want [to film] people who have some sort of spirit in them, you know? And I think actually that's what we ended up finding. I think Jose, for example, is somebody that especially a lot of younger people are going to relate to.

Myles Helfand: Just to back up for a moment. Susan, you're describing yourself as the everyperson in the U.S., who considers herself to be well informed, and is clearly a very bright, very intelligent person, who has spent her career as a filmmaker concerned about issues of social justice, fairness, and people getting access to what they need in order to have the freedom to make something of their lives. And yet, you found that there's this entire world in Washington, D.C., that you knew nothing about.

Within the HIV community, for years now, the discussion has been that there are so many -- and I really apologize, because I don't mean at all to pigeonhole you here -- but that there are so many "people like you" out there, that might be really smart, that might really know their stuff, that might be on top of all the news that's happening, and still have no clue just how bad HIV is in the United States.

Susan Koch: Yeah, and I don't know why that is. I think it's because it was really in our face in the '80s, and even in the beginning of the '90s. I remember when we first started hearing about it. Then, I think everybody knew to be careful. [Then] it just kind of disappeared. I thought the numbers had gone down. I didn't realize. I really didn't know. You know, it's a good question: Why didn't I know more?

I don't think people talk about it. I think there's so much stigma. I think it's a combination of factors. I think there is stigma and shame, and so people don't want to talk about it. And I think there's a discomfort whenever you're going to talk about sex and drugs. People are uncomfortable.

And then I think the conversation shifted to AIDS in the rest of the world, not here in this country. Somehow, in everybody's mind, it had become a global issue that the United States had successfully grappled with and won, and now we had moved on to other places.

Obviously, the numbers are huge -- much greater -- in other parts of the world. But I think that perhaps we focused on the rest of the world and, in the process, neglected our own backyard.

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